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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Everyone Wish Me Luck Tomorrow....
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13 posts in this topic

Tomorrow is my appointment with the Professor at St. Mike's Hospital who specialized specifically in Celiac. Wish me luck that I will finally be getting on the proper road to recovery.... I have two meds written down that people have suggested to me re chronic diarrhea, one is Modulon and I can't remember the other, although I do have it ready for the dr. tomorrow.... Hopefully, we can finally get this chronic diarrhea under control.....

Wish me luck, everyone!!! And keep your fingers crossed that he doesn't want to admit me for two weeks, put me on IV, shut down my bowels and treat me with prednisone - which is what my GI dr. said might be done......

Hugs, everyone.....

Karen

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GOOD LUCK! I'll be praying for you.

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Thanks! I am keeping my fingers crossed, and my toes too!

I found the second med someone suggested: Hyoscyam 0.125 mg.

Apparently, it helps with both the abdominal pain and the diarrhea....

Karen

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Good luck Karen! My prayers and good thoughts are with you too!!

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Good Luck hope you get everything under control

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Good luck! We'll get this stuff under control....keep us posted.

-celiac3270

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Good luck, Karen!!!!

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Good luck, Karen!! I hope you get some answers and support!

Is this: Hyoscyam 0.125 mg, Levsin? Pretty neat since it can be disolved under your tongue... but, it's a sulfa drug... bad for me :angry:

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Hello everyone.

Well, I have had some good news and some not so great news....

Professor Dr. Moore was one of the most knowledgeable dr's I have come across in regards to celiac. He spent over an hour with me explaining things, possibilities, complications, etc.

Basically, something is really quite askew..... I can't remember which one he was talking about, but one of the tests from back in June with Dr. Devlin, he said was sky high. It was over 100. He says there are several possibilities for my failure to show improvement on the gluten free diet.

Number One: He said definitely to stay lactose free as that is a major irrititant to a celiac because the part of the villi that digests lactose is eaten away and there is no possible way that we can digest it.

Number Two: He wants to do a full colonoscopy within the next two-three weeks, with several biopsies, and depending what the biopsies show, he will decide then if I require prednisone treatment.

Number Three: He talked alot about the possibility of Collagenous Colitis I may have along with my Celiac.

Number Four: I must remain on a high fibre, lactose free, low "flatogenic" diet.

No bananas, apples, cherries plums, prunes, or their juices.

No lentils, chick peas, kidney beans, cabbage, cauliflower, broccoli & turnips.

(apparently, bacteria in the colon (large bowel) ferment these poorly absorbed carbohydrates to produce gases and irritating organic acids)

The high fibre (40 grams per day) includes 2 heaping tbsp. of Pro-Diem (psyllium) or 2 tablets of Equalactin (calcium Polycarbophil) at bedtime. Since Equalactin is only available in the States, I guess Pro-Diem is my only option. Too bad, because the professor said that the best results come from Equalactin. I must also have each day 2 servings of fruit, 2 servings of vegetables, 1 lettuce salad. He also wants me to have 2 - 3 tablespoons of yogurt with culture per day. I asked him about the acidophillis for the bacteria, he stated that in lab results, bacteria from yogurt grew at a much higher rate than bacteria from acidophillus.

I also can no longer take any Pepto Bismol, as he does not want the test results to be masked in any way by medication. He also took blood today.

Apparently, and ironically, if it is Collagenous Colitis, the first treatment he would start with is very high doses of Pepto Bismol tablets (8 per day) for 8 weeks. Sometimes, this totally clears it up. If that does not work, then the next step would be steroids.

After all of the tests are done and the results are in from the biopsies, that is when he will determine where to go next. He did seem to make it sound that there are many possibilities other than refractory, but of course, would not rule that out.

Also, another possibility he stated is that my thyroid could be causing problems. Apparently, when you have celiac and are susceptable to malabsorption, you cannot absorb your thyroid medicine very well. He will also be testing this further as my last test showed on the low side.

One good thing I found out today is that last year when Dr. Devlin was doing all the tests, one test he did was a small bowel biopsy. Apparently, this was to look for the abnormal T-Cell and produces lynphoma (sp?). That test showed negative. Yay!

Well, it has been quite a day! I have to say I do feel better knowing there are many more possibilities than just refractory. Also, he stated he is not going to start any medications until he knows which route is necessary to take.

I should find out within a couple of days when the colonoscopy is scheduled for....

Have a great day, everyone!

Karen

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Also, forgot to mention this.....

He asked me if I ever get swollen ankles. I said no, never. He said that was a positive indicator, because apparently, that is a major symptom of refractory.... something about our systems not being able to process something (I forget what he said), and that it usually travels down to the ankles......

And also, he mentioned that he thought I should also try oats with the psyllium seed husk to bulk up. I am quite terrified to do this though. He said that all studies recently have shown that oats are not problematic for celiacs..... Still leary of oats, though.....

Karen

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Good luck with the new diet. Hopefully you'll be feeling better soon!

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Good luck Karen. I am glad that you are getting some positive feedback. I have been on that diet before too. I think I ate alot of rice, chicken, and sweet potatoes. Its all worth it if it makes you feel better.

I hope you feel better soon!

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I am eating a lot of potatoes and rice myself..... I find that it is both very easy on my intestines and is very filling.... I also eat a lot of red meat for the protein...

I do have a question though - for those who take psyllium seed husk, for maximum "bulking", should I take the psyllium before my meal or after my meal?

Thanks for any help!

Karen

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      Hi Cristiana, You are quite right, there could be something wrong with the batch. I have often wondered this myself when I've had symptoms. A lot of manufacturers recall products when they find contamination issues, I often wonder though, how many products 'sneak' under the radar and no-one knows for sure; it could be the reason why so many of us wonder what we did to get 'glutened'. 
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      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
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